New to MG and IVIG not working!
 

I am 57 and was diagnosed with MG in January, had thymectomy in February, went on Mestinon 60mgX4 hrs and was doing OK (not great) until early July when symptoms gradually became worse. My neuro put me in hospital last week (Mon-Fri) for 5 IVIG treatments, so it's been over a week ago and I have been worse than when I went in! He also started me on Cellcept (500mg-2Xday) and Prednisone (20mg-1Xday) and increased Mestinon to 90mg-every 3 hours during the day and a 180 time span Mestinon at bedtime. I have been experiencing VERY heavy arms, legs, chest, head and neck (feels like everything is being dragged to the floor!), as well as dizziness (or unsteadiness). I am unable to drive, work, or do much more than a few tasks around the house in the am, then spend time on the couch in the afternoon/pm. Today I have pain in my lower back...and sharp pain when I walk in my upper back under my rib cage. Also horrible pressure headache and pressure behind eyes. I did get aseptic meningitis from the IVIG after 3 treatments, but they gave me more Prednisone and Tylenol to get rid of it. This sort of feels like the beginning of that pressure again, but it's been over a week, so I can't imagine that is the cause.

I really thought that I would dance out of the hospital after IVIG, but that was far from the case! If anyone has any words of wisdom they would be greatly appreciated! Trying to be patient with the treatments, but it seems like things keep getting worse instead of better...

Hang in there Jordonmom. You can find a way to live well with MG. You're describing some scary stuff. It must be very stressful and stress is MG's worst enemy. I'll just ask that you take it slow and easy (which is a challenge for all of us with MG). Wishing you the best.

Some require more than 5 treatments. I once got 24 at 2x a week. Tomorrow I start 2x a week for 2 months. My doctor does not like to go at a faster pace for older patients. I'm 73.
Mike

Thank you for your reply. I am currently trying to figure out if my "heavy" arms and legs are caused by Cell Cept or from Prednisone...so confusing!

Could be the Prednisone i am on the down scale with it taking 25mg every OTHER day when i was on 60mg per day a few months ago. I notice on my days "off" i am terribly weak but the dr said that the Prednisone has that effect.. Today as a matter of fact i can barely lift my fingers to type on the keyboard but i have to go to work for 12 hours so i said screw it and took 30mg of Prednisone just to get me through the day..

wow read the cellcept insert seems some of those issues can be from cellcept, as far as ivig i have been on it since last year I go 2 days a week every other week and believe me it is no miracle cure I have not seen any major results from it at all but yet I still go for the treatments..